Sharing the stories of those affected by Autoimmune disease

Autoimmune Warrior

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

Healthcare professionals are grappling with the effects of pediatric multisystem inflammatory syndrome (MICS), a complication of COVID-19 in children

Across the world, disturbing reports are coming through detailing a new complication thought to be related to COVID-19 that is affecting children with the virus. The illness, called pediatric multisystem inflammatory syndrome, or MICS for short, causes the immune system to overreact, leading to dangerously high levels of inflammation throughout the body. It impacts the body’s major organs, including the heart, liver, and kidneys, among other parts of the body.

Juliet Daly, a 12-year old girl from Louisiana, was diagnosed with both COVID-19 and MICS after going through cardiac arrest. Thankfully, she was airlifted to a children’s hospital, where she was put on a ventilator until she could breath on her own and her heart and other organs had recovered.

Juliet Daly was diagnosed with COVID-19 and pediatric multisystem inflammatory syndrome after being admitted to the hospital. Image courtesy of CNN.

Pediatric multisystem inflammatory sundrome has been compared to Kawasaki disease, an inflammatory condition primarily found in children under age five that impacts the heart’s coronary arteries. Kawsaki disease can lead to complications like artery enlargement, aneurysms, issues with the lymph nodes, skin, and the lining of the nose, throat and mouth. Some experts hypothesize that the coronavirus could be a trigger for Kawasaki disease. A recent study done in Bergamo, Italy found that the incidence of a ‘severe, Kawasaki-like disease’ increased 30-fold after the virus broke out in the region, further supporting this theory.

Pediatric multisystem inflammatory syndrome also bears the hallmarks of a cytokine storm, a phenomenon in which the body’s immune system overreacts to the virus and mounts a harmful inflammatory response in the body.

This raises the question, is MICS autoimmune in nature? While little is known about the condition, Dr. Randall Williams, Director of the Missouri Department of Health and Senior Services, said during a recent press conference that the condition is an “autoimmune reaction“, and that “it’s basically where your body reacts to an antigen and starts attacking itself.”

The relationship between viruses and autoimmune disease has been studied in the past. For example, studies have found a link between the Epstein-Barr virus (EBV) and the pathogenesis of a number of autoimmune diseases including lupus, multiple sclerosis, rheumatoid arthritis, juvenile idiopathic arthritis, inflammatory bowel disease, type 1 diabetes, and celiac disease.

Though there isn’t a cure for MICS, it’s treated by giving patients steroid and intravenous medications commonly issued to patients with an autoimmune disease, in an effort to decrease damaging inflammation.

While the coronavirus has proven to be less common and less deadly in children than adults, two young children and a teen with COVID-19 who showed Kawasaki disease symptoms have died in the state of New York. As a result, parents are advised to take precautions and contact their pediatrician or family medicine provider if your child has a fever to determine the best next steps.

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In the study, researchers found that the prevalence of the most common biomarkers of autoimmune disease, called antinuclear antibodies (ANAs), is significantly increasing in the U.S. overall as well as among certain populations. These affected populations include:

Men

Non-Hispanic whites

Adolescents

Adults 50 year and older

The researchers examined over 14,000 patients ages 12 and up over the course of three time periods spanning 30 years. In this time frame, they discovered that the overall frequency of ANAs in their test subjects went from 11% affected individuals to almost 16% affected. The worst affected population was the adolescent group, who experienced a nearly three-fold increase in ANA rates over the course of the study period.

While the exact cause of autoimmune disease remains unknown, many scientists believe that a combination of genetic and environmental factors is responsible. However, the researchers in the study state that because people have not changed much genetically over the past 30 years, it is more likely that lifestyle or environmental factors are responsible for the ANA increases.

Christine Parks, PhD, is one of the researchers involved in the study who focuses on the environmental causes of rheumatoid arthritis (RA) and other autoimmune diseases. “These new findings…will help us design studies to better understand why some people develop autoimmune diseases,” she said. She also added that there are over 100 chronic, debilitating autoimmune conditions that could stand to benefit from further research.

Donna Jackson Nakazawa, a Maryland-based science journalist and author of the book The Autoimmune Epidemic, believes that our ever-increasing exposure to chemicals, heavy metals, and viruses, coupled with stress, dietary and other lifestyle factors, is primarily to blame for the increase in autoimmune disease. She also points out that there may be a connection between autoimmune disease and allergies, which are also skyrocketing.

Nakazawa herself suffers from Guillain-Barre Syndrome, a paralyzing autoimmune disease similar to multiple sclerosis (MS). In her latest book, The Last Best Cure, she states that experts predict that the number of Americans who suffer from chronic conditions will rise an astonishing 37% by 2030.

While this may not sound like positive news, one good thing is that with an increase in autoimmune disease, more scientists, medical professionals and pharmaceutical companies will be encouraged to undertake research to find treatments and, ultimately, a cure for autoimmunity. I personally am hopeful that we will see enormous strides in biotechnology in my lifetime.

Are you surprised by the increase in autoimmune disease in the U.S.? Let us know in the comments below!